Sunday, July 29, 2012

I love the Olympics. Ever since I was a little girl back in 1984 watching Mary Lou Retton win the gold medal in Los Angeles, I was hooked. I was only 7 years old then and taking gymnastics lessons already. I remember sitting there glued to the TV in our living room...watching her...watching the strength and determination on her face as she ran across the floor, hit the spring board, and vaulted her way to victory. I wanted to be like her. I wanted to grow up and be in the Olympics and win gold just like her. I wanted to have my picture on the Wheaties box of cereal. I remember feeling my heart pound with excitement and pride as I saw her stand atop that podium, gold medal around her neck, the red white and blue on her uniform, and hearing the Star Spangled Banner play over the speakers in that arena. I wanted that to be me one day. Sadly, we all know that never came to be....but it's a beautiful memory that I will never forget for the rest of my life.
Fast forward 28 years...Olympics now in London, England....sitting in my own living room...watching gymnasts perform on tv with my own daughter....she's just 1 year older than I was back then...she's 8. I think I spent more time tonight watching her face...watching her reaction...seeing her excitement and her love for the sport and the Olympics shine through across her face. It was an amazing thing to see. A lot of years have been lived in that 28 year time span.
When it was all over and time for Emma to go to bed, she turned to me and said, "Mommy? If I want to be in the Olympics when I grow up like those girls, can I?" I told her of course...she can do absolutely anything she wants and I would support her the entire way! A dark cloud seemed to pass over her face...and then she said to me, "But none of those girls have diabetes...none of them wear a pump. Would they still let me do gymnastics in the Olympics even if I have diabetes?"...............
My heart shattered as I thought of the magnitude of her question. I find myself sometimes wondering just how often diabetes runs through her mind...just how she feels about it...if she feels like she won't be able to do things because of it...if she feels different...if it bothers her. The look on her face and in her eyes when she asked me that......it was horrible...and it made me sad. Not that average sad we all sometimes get.....but rather a deep aching, helpless, angry, exhausting sad....deep in my heart...and it stung.
So, I looked at my sweet girl's face and told her that yes...she most definitely could do gymnastics in the Olympics....with diabetes...with her pump...she could do it...they would let her...she could do it.....and she could win a gold medal...because with or without diabetes....she is the strongest and most determined little girl I know...and THAT is all you need to accomplish what you want to.
She leaped and twirled to the stairs and made her way to bed....with a smile on her face and that same excited and determined look in her eyes that I had 28 years ago.

Friday, July 27, 2012

So the other day I took Emma to the park to play. As usual she made a new friend and without even finding out each other's names, they were off and running. Climbing on the monkey bars, sliding, swinging....the usual kid stuff. I think that will be one thing I will miss most when she is grown....going to the park....playing there with her, hearing all of the other kids squealing, laughing, playing games. I think I will miss that as I sit back and wait for grandkids to arrive. Anyway, after a little while, the girls asked me to push them on one of those big circle flying saucer shaped looking swings. They both climbed on and I started to push. I couldn't help but overhear the conversation as I stood there in the sun. Emma and her new friend were laying on their backs and staring up at the clouds as I pushed them. I noticed that Emma had her hand protectively over her pump site on her leg. My first thought was that maybe she was worried that the other little girl would bump it accidently...but then I started to wonder if she was simply trying to hide it....so the little girl wouldn't see it and ask her the usual questions. I have noticed Emma is starting to reach that point in her d-life where she gets annoyed with the questions...and I can't say that I blame her....I, myself get annoyed with the same old questions! Anyway, I stood there pushing the swing and the girls started talking about the clouds. The little girl told Emma that she loved how they looked so soft and fluffy.....and Emma chose that moment in time to become philosophical for some reason. She said to her new friend, "Yea, but really....how do they REALLY know if the clouds are soft and fluffy? I mean what if....just what if...they are hard?" I had to bite my cheek to stop from bursting out in laughter at the direction this conversation was taking. The little girl replied with, "Well....I mean LOOK at 'em! They gotta be fluffy!" It was quite possibly one of the funniest conversations I have heard in a long time actually. The girls ran off to play again....and I finally let out a giggle.
The mind of an 8 year old kid is really an incredible thing. They are so "take it at face value" and they have no qualms about telling it like it is yet. I love that. I think that the questions and the wonderment and the honesty of a kid is something special.

Saturday, July 21, 2012

Sometimes I feel like a total complete outcast. I feel like I am an alien walking around on Earth and no one understands me and I can't relate to the madness and it's overwhelming and I just don't get it. I try my hardest to understand...but it's pointless. I am a firm believer in allowing everyone to have their own opinion. I am a firm believer in the "to each his own" mentality. I am probably one of the most accepting and easy going people you will ever meet. I guess that is why I am naive in thinking that the rest of the world would treat me the same way? I don't know....I just feel like I don't belong sometimes. I feel like I am that shy quiet kid who tries to not make eye contact with anyone as they walk down the crowded hallway at high school. I feel the weirdness. I feel the difference. I feel like if they all really knew the thoughts that go on in my head, that they would treat me differently than they already do. I feel like if I don't keep up with the easy Amy....the laughing, the fun, the jokes....the never serious...no discussion...no sharing of my opinions......that I will wind up standing in that dark dusty corner of the hall....alone....standing there in my weirdness.
I can't relate to friends that don't live with diabetes in their house. I even can't relate to some friends that do live with it. I feel torn between two world's sometimes. I feel like if I talk "too much" about this disease that people will think that I have no life outside of this disease. I feel like if I don't "talk enough" about it, that people will think that I am not serious about my daughter's health. I feel like if I am not making jokes or laughing that people will think there is something wrong....and judge me...
I guess I just wish that the rest of the world was as accepting........but I know that will never happen. It's a viscious circle really.....I want the acceptance...but I want to accept them for who they are too....but I want the same respect that I give out...but the close minded are incapabale of respect. I guess it all boils down to the overwhelming need I have to do everything in my power to ensure that my kid will be accepted and respected....and allowed to have her own opinion without being judged.
Ugh....my brain hurts and clearly I overthink things. Sorry....I just had to get this out.

Wednesday, July 18, 2012

Do you want to know what one of the things I love most about the DOC? The fact that we are all different. Some of us have only one child and some of us have many children. Some of us have one type 1 kiddo...and some of us have two or even three. We have such varied backgrounds...professionals, nurses, teachers, stay at home Mom's. Some of us live in areas where we are virtually the only diabetic families in town. Some of us live in areas where we have groups of families mere minutes away. We are tall, short, young, old...we represent every background and every culture out there. Some of us are wealthy...some struggle to make ends meet. Some of us are happily married and some of us are single parents shouldering the weight of this disease on our own. Some of us have diabetes ourselves and some of us are the parent...the stand in pancreas for our child. Some of us have lost our children to this disease. Some of us have had our hearts ripped out of our chests and somehow managed to keep moving....keep going...keep living after the loss. Some of us have been doing this for more years than we care to count...and some of us are brand new...taking our first tentative steps on this journey. We pump, we inject, we count carbs, we poke fingers, we laugh, we cry, we fall into our depressions, and we rejoice our victories.
We are a diverse group of people bonded together for life because of this disease. We are scattered across the globe and yet we are united as one. We are there to lift each other up when we have fallen...dust each other off...encourage each other...motivate each other...love each other.
I often wonder if other diseases have this same type of thing. Do families dealing with cancer have a second family because of their disease? Do they find comfort in that family? Are they there for each other to support each other?
I think back to the days before diabetes and how I had no idea this little world even existed. I just lived my life and went about my days totally oblivious to this little community that I was not a part of yet. I like the diversity. I like the varied backgrounds and opinions and lives we lead.
It sometimes reminds me of the ending of the movie "Horton Hears a Who" where all of the characters in Who-Ville come together to sing and make as much noise as possible so they can be heard in Horton's world. I think we are like that sometimes...we are many...we are all over the world...and yet we all have one voice...one bond...one life.

Sunday, July 15, 2012

You know those moments when you are silently slipping into your child's room in the middle of the night to check on them...check their blood sugar...watch their chest rise and fall...kiss their forehead and pull the blanket back up to tuck them in? The moments when you are exhausted and feeling sorry for yourself. Those moments when you feel like if you didn't have bad luck, you would have no luck at all. The car breaks down...on a Sunday...it has to be towed and two days later your pockets are $900 lighter. The red tape insanity that comes along with renewing a passport that has expired...when you live in a different country now...and have a different last name now...and are 10 years older now and you are trying to just make enough money to be able to take your kid to visit her grandparents that live in the States and she only gets to see once a year....she needs that grandparent relationship...she needs it and when you look at her eyes and know in your heart that you can't NOT make this happen...you HAVE to find a way to get there to visit. It seems like the high blood sugars will never stop...you will never figure it out...you will be stuck in this craziness forever...wandering around like a zombie. The heat outside is unbearable some days and you have run out of things to entertain your kid with to keep her indoors and prevent her from getting heat stroke and you feel like if she tells you she is bored one more time you might just wind up in the corner rocking back and forth. You get annoyed with the fact that there is never enough money...never enough to make it easy...you get jealous of the rest of the world that seems to never have to struggle...never has to make it work paycheck to paycheck. You are annoyed with the little things. You are letting them build up and build up and they seem to be consuming you.
...........and then you read a post on the old world wide webby from someone. Someone that you don't know. Someone that you've never met...but you have read many things she has written...so you feel like you know her if even only a tiny bit...you have a small glimpse into her world by reading her words. You are feeling overwhelmed by your own life, and you come across a post of hers....and it smacks you so hard that you sort of slump in your chair...the wind knocked out of you....the tears falling from your eyes...the realization that you really don't have it that bad. You really don't have only bad luck. You really don't need to be focusing on the money problems, the car, the high blood sugars that FINALLY went down by the way. You don't need to focus on those things. You don't need to let them consume you and make you feel like there is nothing good in your life.
You have plenty to feel greatful for. You have a happy healthy child (yes, she has Type 1...but she is healthy). She is perhaps the funniest person you have ever met...and you get to spend every day with her. You have a roof over your head and food in your cupboards. You have a husband that tells you he loves you daily and whose face lights up when he is sitting on the porch and you pull the car into the driveway as you arrive home. He tells you that you are beautiful even when you don't feel like you are and brings you a coffee and kisses you in the morning even though you have morning breath and your hair is whacky. You have a cat that is always there to snuggle with you and purr and look at you adoringly. Little does she know that she is comforting you more than you could ever comfort her. You have friends that love you...friends that love your kid too...friends that get you and know that you are a dork and have a wicked sense of humor and still love you anyway. You have friends that invite you over for beer and cheesecake...and you spend the majority of the time laughing...and not caring what time it is.

Thursday, July 12, 2012

For the most part, I believe we go through life with an air of confidence. We believe that good things will happen. We set goals for ourselves. We have dreams and aspirations. We focus so hard on what's to come next, that a lot of the time we lose sight of what is happening right now.
Diabetes even tends to fall into that category for me sometimes. I check blood sugars, make adjustments, count carbs...I do what needs to be done to keep my kid alive everyday. I focus on the future...and take it one step at a time. Making it through that first needle, that first year, getting her on a pump, waiting for the artificial pancreas...and the ultimate end goal....a cure.
There's a place in my heart that doubts...a place that I try to shut out and shut up whenever it pops into my head. Sometimes I slam that door shut so hard and with such force that I have to stand there and wait for the dust to settle before I am able to speak again.
That's the thing about this life I think that really gets to me still...even after all this time. I have tried and tried to force myself to be ok with the unknown, the guessing, the fact that nothing is really for certain. It's a difficult task to live in that gray area.
So, like me, you may ask yourself...what can I do? What can I focus on to make this life filled with guessing and unknowns, and gray areas a little bit more bearable? Well, keeping in the true spirit of diabetes...I don't really think that there is a clear cut answer to that question. We do our best. We take each day as it comes and try to learn from our mistakes. We try to remember that we WILL make mistakes. No one is perfect and no human being could ever possibly be a perfect pancreas. Not even a Mom. We make the mistakes that teach us lessons and we move on...we get upset while they are occuring, we cry, we feel guilty, and then we move on. I think that is one of the most important abilities you need to make it through this diabetes life without losing your entire mind. We need to master the fine art of accepting the fact that we will make mistakes...we just will....it is guaranteed to happen. We need to accept that and we need to know how to move on from them.
I think as parents we tend to put this enormous amount of pressure on ourselves....to do it right, to love them more than we were ever loved, to give them more than we ever had, to show them what we wished we had been shown, to do it right, to help shape these little human beings into kind, caring, compassionate adults....because we want to help make the world a better place. Well, when you add diabetes into the mix....the pressure is magnified...we expect ourselves to do it right, to be perfect, to get those numbers in range and keep them healthy and avoid complications and spread awareness so we can ensure that they will live in a world that accepts them for who they are and not pities or misjudges them for what they live with. We want the best for them. What parent wouldn't?
So, cut yourself some slack. When you are in the middle of a seemingly losing battle with diabetes, give yourself a time out.....pause....take a deep breath and keep repeating the words, "I am not perfect. I am not a pancreas. I am doing the best I can." and soon enough you will believe them in your mind and in your heart. It's an ongoing lesson though....isn't that really what life is all about though? learning? Living...loving...and learning.
Huh...apparently I am wearing my philosophy hat tonight....lol

Tuesday, July 10, 2012

So, I haven't posted in a while.....I've kind of been in a funk. I know we have all been there before. This disease just gets to you sometimes. It tries to consume you and sometimes you just have to take a step back and breathe. Well, I have been breathing. It's not to say that I haven't been fully submerged in diabetes as per usual. Don't get that statement wrong....I do have a life outside of diabetes and I do things not related to diabetes all of the time. But as you know, because this disease is something that you have to manage every single day without fail...no pause...no break....of course it would still make me fully submerged in it. Since Emma has been out of school now on summer break I have been struggling trying to get her blood sugars in check. She has been high......a lot....and it upsets me. I don't want to have a poor a1c again next clinic visit. I want to prove that I can do it. I want to prove to myself I think most of all that I can do it......because she is with me....every day...24/7....she is in my care and I should be able to get a handle on things better than I would when she is not in my care during the school year. It's left me feeling kind of blah. I go through moments of pissed off-ish-ness (yes, it's a word....at least in my world it's a word!), depression, victory, and blah. I just keep plugging along....searching for those patterns that are hidden away amongst the layers of life....activities...swimming, parks, scootering, playing.....the heat...the non-stop viewing of her new favorite movie "Grease", the random eating and sleeping times. There are patterns there....I know they are....they are always there....I just have to find them. So, I keep moving....because I'm like a shark...I have to keep moving.
Which brings us to today......
Emma went upstairs to go get her slippers because her feet were cold and I heard her pause at the top of the stairs before coming back down. She walked into the kitchen with that old familiar blank stare on her face....pale....dark circles under her eyes....glazed over....her shell was there...present with me in the kitchen...but SHE wasn't fully there. It was almost as if I could see her struggling to get her focus...get out of the murkiness that is a low blood sugar. She was in there...her spark was there....but it was muddied by the disease that we fight everyday. She said to me, "Mommy.............(pause pause pause pause)...........I knew I was low because when I tried to come back downstairs from getting my slippers just now...................(pause pause pause pause pause ever loving friggin pause........)........I couldn't.........my legs wouldn't work." She had a look of sadness in her eyes when she struggled to get this sentence out. (Please note that all the while she was struggling to speak, I was getting the meter out and testing her) She was sad. She looked stunned that the legs she has used for 8 years now just....wouldn't....move. They wouldn't do what her brain was telling them to do. She looked like she could not believe that that just occured.
I gave her juice. I fixed the low. I saved her life. WE saved her life. once again.....for the millionth time in the past 4 years. We saved her life.
Afterwards....like usual...I sit here and reflect on the moment. Yes, it broke my heart to see her struggle to speak. Yes, it shattered me to see the incredulous look on her face as she came face to face for the first time ever what it feels like to have your body betray you. She has had countless lows before....but never ones that she has mentioned that her body wouldn't do what she wanted it to do. Yes, this all broke my heart and makes me sad and mad and pissed off....but it's what we do. We let those feelings out...we scream them, we cry them, we cheer them, we shout them out loud.........we get them out and watch them fly away up into the night sky.

Wednesday, July 4, 2012

I'm lost
lost in a far away land of no control
no light
no sun
lost in a land of pain
anger
hate
I'm lost in a field of fog
so thick
choking and enveloping
the very existence of my breath
lost in a land of humid
and bitter scenes
sticky and strained
gasping
ache
I'm lost
No longer me
no longer can i see
no longer can i be
the same me
the same me
the same me
Lost in a land of unknown
wandering around below